Crunchy Tubie Mama goes to the ASPEN Conference: Part 1

My heart was pounding in my chest. I was significantly more nervous about this than I had anticipated. I wasn’t even invited here…well, I was, but not by these people. I had a flashback as I recalled what had brought me here…how it all began.

My son was violently ill on enteral formula for months. He was debilitated by nausea. And real food through his feeding tube had made that better. And so, feeling inspired to help others, I started this blog. I fully expected a couple hundred people would come to it in total, and I’d be able to offer some help to them like another mom had once helped me. And that was enough for me. That was all that I had planned.

Now, three years later, here I stood in a room packed with dietitians, doctors, and other healthcare professionals who had just listened to a presentation on blenderized diets at the ASPEN conference in Phoenix, Arizona. I stood, ready to speak up about the many common recommendations regarding tube feeding that are not supported by any scientific data at all. I was ready to speak for the online community of 10,000 tube-fed people and their caregivers whom I represent and the near 100,000 people who have visited my blog. Yes, things had gone quite differently than I had originally planned.

So, why was I so nervous? I’ve attended conferences before in my particular field. This really wasn’t that big of a deal. The Q & A following the presentation was underway, and as I waited for my turn at the microphone, I came to understand why I was suddenly and unexpectedly so shaken up. In a way, I was crashing their party. I showed up uninvited because my thoughts and input were not welcome. Yet, here I was, preparing to share my thoughts and input anyway.

I looked across the room and felt every incident in which I have been spoken to in condescending and disrespectful ways by a dietitian. I remembered all of the times I had been treated like I do not matter by a healthcare professional. I felt intimidated as I considered I was about to speak in a room full of people who looked down on me.

But then, I remembered all of the times in which I had been treated like I do matter. I recalled the many emails from dietitians from around the world that I have received, thanking me for writing my book, Stand for Food, and explaining what is so wrong in the enteral industry. I remembered the numerous times members of my son’s medical team referred a parent to me for help with tube feedings.

I remembered the countless emails from moms whose children had been transformed by something as simple as real food after I’d helped these moms learn how to provide it for their tube-fed child. I reminisced about the many, many times a mother had come to me with a recipe from a dietitian for a blenderized diet that was making her child vomit terribly, and my recipe helped her child get better.

And then I knew. I may not have been invited to share my experiences with these people, but I most certainly should have been.

I had helped more mothers learn how to feed a blenderized diet than anyone in that room. I had spoken with more tube-fed families than anyone in that room ever will. Most likely, I had read more scientific studies relevant to enteral nutrition in their entirety than anyone in that room. And most certainly, I had prepared and fed blenderized meals and snacks through a feeding tube thousands of times while most or all of them had never done so a single time in their lives.

I deserved to be there. The tube-fed community deserved to be spoken for. And no, I’m not the only one who could do the job and do it well. But, I was the one who was there. My heart rate slowed. The shaking stopped. I wasn’t nervous anymore because I firmly understood I had nothing to be nervous about.

This was just a tiny step amongst many large steps that need to happen to improve the lives of people living with feeding tubes, but we have to start somewhere. And so I took the tiny step. I spoke into the microphone.

“Hi, this is Bradley, and I am his mother. I have fed my son a blenderized diet for 3 ½ years, and I lead an online community of over 10,000 people who feed a blenderized diet.”

People who had been looking toward the stage or down at their phones suddenly turned and stared at me. Were they wondering what I was doing there? Were they excited to hear from me? I had no idea.

“I have a few questions. May I go through them? You stated that children seem to vomit less when fed blenderized diets than on enteral formula, and you stated we don’t know why that is, but that it is probably due to the viscosity. Could I have a response to this statement? If most of us in this room consumed sugar for all of our carbohydrates every single day, we would probably be throwing up, too. I mean, if it is just the thickness of the food, we could just add a thickener to formula and that would solve the problem.”

(By the way, I have known people to try this…it does not solve the problem).

I was then told she meant we don’t have any data to explain why, and this would be difficult for me to understand because I was coming from the perspective of a mom.

I interrupted. “Actually, I am formally educated in a field of science, and I worked in research for several years. I spent over 18 months reading virtually every peer-reviewed scientific study relevant to this topic from 1950 to now. That’s where I’m coming from.”

These people were not going to talk down to me. And yes, it felt good to say that.

They insisted we have no way of knowing if the sugar was the problem. I had more to say on this. But the time I would be up there was limited, so I let it go.

I thanked her for telling dietitians that it is important to not turn clients away when they want to do a blenderized diet because when dietitians do that, they don’t just give up and feed formula. They do it on their own or they come to someone like me. And while that is fine if they come to me…I’m happy to help…the point is saying no to a blenderized diet is not stopping people from feeding a blenderized diet.

I continued. “You mentioned that ‘obviously’ a child has to be medically stable in order to be fed a blenderized diet. Is there any data to support that recommendation since you said it’s so obvious? Is there data that says high sugar diets are better for people that are not medically stable?”

There was a bit of an awkward pause. And so, I continued on.

“I had a mom come to me not too long ago whose daughter was admitted to the hospital on the regular floor. She was told if she was sick enough to be in the hospital, she was not medically stable, and had to be fed enteral formula. The mother insisted formula made her daughter vomit violently, and she required a diet of pureed food.

“The hospital stated they would remove the mother from the hospital if she fed her daughter pureed food. They forced her to feed formula. The child vomited and aspirated so severely, she ended up going into a full arrest and had to be resuscitated. She spent nearly a month in the ICU following that incident. So, again, is there data to support this recommendation because I could tell you many stories of children experiencing severe side effects from being fed enteral formula while they were already sick with something else.”

The presenter said healthcare facilities each have their own policies that must be followed. Which, of course, did not answer my question.

“But, it is information that is being presented at conferences like this that are leading to these policies.”

Someone who had presented on a separate topic jumped in. “We can’t tell healthcare facilities to give something to a patient that may cause an adverse reaction.”

In other words, they apparently believe that feeding a person food might cause an adverse reaction while they believe that feeding enteral formula has no chance of causing an adverse reaction as if there is scientific data to support such a view (and by the way, there isn’t).

For the record, every other child in the hospital that I spoke of was sick enough to be in the hospital, yet were allowed to consume food. If being in the hospital truly meant that a person was too medically unstable to be fed food, there would be no need for hospital kitchens.

I was further told we don’t know if the formula is what caused the vomiting right after a presentation about data that tells us that people vomit more on formula than they do on blenderized diets.

So, just to clarify, there is no scientific data to support that recommendation. They offered none because there is none. This recommendation isn’t so obvious after all. The moderator was getting ready to shut me down, I could tell. I knew it was done. I told the presenter I would appreciate speaking with her afterward, and I waited for her after the Q & A.

I had several more concerns.

1. As I sat during the presentation, the presenter said, “How many of you here have had a mom say she ‘THINKS’ her child is not tolerating formula?”

A wave of laughter moved across the room. I was utterly appalled. I am fed up with healthcare professionals believing it is acceptable for children to vomit 10+ times per day. Listen to the first episode of my podcast here as I share my son’s story. You will learn that to this day, I cannot speak about those terrible months without crying because of how extremely traumatizing that was. It was more traumatizing than handing my baby over for open heart surgery. Yes, it was.

No one would ever laugh about a mother shaking and crying as she hands her baby over for open heart surgery. It is equally inappropriate in any setting to laugh about a mother who is watching her child be made violently ill day after day. My son could not play with toys while he was fed enteral formula because it made him too sick. He was not developing. I cried EVERY. SINGLE. DAY. My son was so sick and in so much pain. NOTHING about that is funny. There is no call for a humorous reaction to such an experience. Ever. At all.

I confronted her on this.

2. I told her there is a double standard when it comes to enteral formula and blenderized diets. There is always a demand for enormous amounts of data to support recommendations regarding feeding a tube-fed person food (you know, food…that thing everyone else in the entire world uses for sustenance) while no data is required at all to support recommendations regarding feeding a tube-fed person enteral formula (a product documented for decades to increase reflux, vomiting, and other GI complications). It seems when it comes to enteral formula, recommendations can just be all willy nilly and made up with no legitimate data at all to back them up, but when it comes to food…what these people themselves choose to eat…there must be large amounts of data before any recommendations can be made. This hypocrisy is unacceptable, and it continues because of presentations like the one I sat in and the lack of people critically evaluating what they are being told.

3. I didn’t take the time to address it, but now think perhaps I should have. She stated in her presentation that a dietitian’s job is to evaluate whether a mother can handle feeding a blenderized diet. If she is late to appointments or often cancels, she isn’t ready for a blenderized diet.

Oh? You can ask my child’s doctors, therapists, my own doctors, and the many dietitians I’ve consulted and subsequently fired because they wanted Bradley on enteral formula…I routinely show up for appointments late and totally disheveled if I even show up at all. Yet, I have fed Bradley a home blenderized diet successfully for 3 years. I lead a community of thousands of people feeding blenderized diets and daily help multiple people, on an individual basis, learn how to do so as well. I have a book about blenderized diets that has sold throughout the world.

Based on her criteria, Bradley is not a candidate for a home blenderized diet, but obviously he is. I’m busy. But, I’m never too busy to feed my child food. Stop making blending so complicated. While I’m thankful for the options available with prepared pureed food, generally speaking, mothers do not have to prove that they are capable of feeding their child food. If there are issues that create doubt, the dietitian should be more involved to be sure the mother understands what to do.

Mothers of orally-fed children do not have to go through an evaluation process so it can be determined whether she is capable of preparing food for her child. I do not appreciate the fact that tube-fed mothers are automatically assumed to be incompetent unless they prove to be otherwise.

If the mother is overwhelmed and she states she would prefer a packaged food product either in full or partially, then, by all means, go for it. But the idea that parents should have to prove that they can feed food to their child before being given permission to do so is incredibly insulting and offensive.

I have helped countless parents learn how to blend. The amount of help each parent needs varies widely. But, I have yet to meet someone who is incapable of doing it at all. It has truly been an amazing experience to work with so many moms who come to me desiring to feed their child a blenderized diet, but are feeling so overwhelmed by the thought and questioning if they are capable because that is how they have been made to feel by a healthcare professional somewhere.

To see each and every one of these moms, again and again, move from a mom who is terrified, feeling incapable, and overwhelmed to one who is knowledgeable, empowered, and leading others is an experience that I will never be able to describe with words. Dietitians, doctors, and other healthcare professionals, if you would just give these moms a chance and support them in these early steps instead of doubting them so often and thinking so little of them, you could experience the same.

We talked for quite a bit. I don’t feel she shared with me what she did with the intention of me posting it to the entire world, so I will respect that. But, I can say this, which I already knew: there are drastic changes that need to happen in the enteral feeding industry. And healthcare professionals are not doing what needs to be done to make the changes that desperately need to be made. So, we, the tube-fed community are going to have do that work ourselves.

And we will. I left. Bradley and I returned to our hotel. I was exhausted after a long day. But, I felt good. Regardless of whether ASPEN agrees with me on this statement or not, I did the right thing. I had done what was in my power to bring the perspective to the enteral feeding industry that it needs to improve the lives of tube-fed people. It wasn’t much. But, I had done what I could.

The next morning, I headed to the convention center for what would turn out to be a very busy day. I wondered if I’d be looked at by many of the attendees as they thought, “Dude, there is that crazy mom that was at the blenderized diet presentation.”

I shrugged my shoulders. They can think what they want. Someone stopped me on the street. “I’m so glad I ran into you. Good job standing up there last night. I’m so glad you came.”

And then someone else came up to me. “I just have to say, I am so impressed with what you did last night. Thank you for standing up and saying what needed to be said. I’d love to chat more. Can I give you my card?”

Before the card was in my hand, someone else came up to me. “That was amazing last night. We need to see more of that around here.”

“You made my trip out here worth it in just those few minutes that you spoke. Can I give you my card? I’d love to talk with you.”

“Hi, I’m a dietitian. I am working on a protocol for blenderized diets at the hospital I work for. Could I talk to you some more? I’d love to hear the real information about blenderized diets.”

I passed out free copies of my book. I collected card after card. It took forever to get to where I was headed because of the number of people approaching me. I have a hell of a lot of people to email.

A physician spoke to me and said, “I know blenderized diets are so much better. And I want my patients on blenderized diets. But, I just feel so guilty adding that burden to a mother. I raised 5 kids, and I know how hard it is.”

I replied. “You raised 5 kids? I bet that was overwhelming at times.”

“Yes, it was.”

“And none of them had a feeding tube, right?”

“No.”

“At any point in time, did you ever once give serious consideration to the idea of feeding your children nothing but Pediasure because it would make things easier for you?”

Her eyes widened. “Well…no! I didn’t! I never thought of it that way. Wow! You’re right.”

“Whether you intended to or not, what you just asked me implies that tube-fed people are not worth as much effort as orally-fed people. You don’t feel guilty recommending moms of kids without feeding tubes to feed their kids nutritious food. You shouldn’t feel guilty recommending moms of kids with feeding tubes to do the same. We value our tube-fed kids just as much as you value your orally-fed children.”

People listened. Dietitians listened. Doctors listened. And they were eager to hear more. Many are seeing they haven’t been given accurate information. Many are coming to understand that the enteral industry has been focused on what is best for the industry, not on what is best for tube-fed patients. In fact, a dietitian that is closely associated with ASPEN said those exact words to me. And they feel powerless to promote that change.

Many moms feel powerless, too. And dads. And tube-fed people. However, the reality is that we are powerful.

I was then approached by someone who works for ASPEN. I was invited to look into a week about educating parents about malnutrition. Because, she said, that’s the week for parents. This conference was to educate healthcare professionals, not parents…she made that clear by stating that multiple times.

In other words, and perhaps I misread what was being said to me, but it seemed to be insinuated that as the mother of a tube-fed child, this was not the right place for me. I’m happy to be corrected if that was not intended.

It insinuated that people who actually have feeding tubes or people who provide care for a person with a feeding tube have no information or perspective to offer that would benefit the healthcare profession. And if that is what was being insinuated, then ASPEN could not be more wrong.

Whether me or one of the many other very capable mothers I know, someone should have been invited to offer a perspective about blenderized diets who has actually fed a blenderized diet. People in the tube-fed community should have been invited to share what life is like with a feeding tube, the problems we face, and the solutions we have found. I do not suggest this should be done in replacement of presentations by healthcare professionals, but in addition to those presentations. Because we know a lot more than you think.

In fact, the question during the Q & A that preceded mine was one that the presenter admitted she was unable to answer. But, I would have been able to answer it. And I know a large number of people who could do the same. Additionally, there was information about volume, blending various foods, etc., given in that presentation that was entirely inaccurate. And I know that because I’ve blended literally thousands of meals and daily talk to thousands of people who are doing the same.

Dear enteral industry, the tube-fed community is tired of being treated like we do not matter. We are tired of being silenced. We are tired of being treated as though we have nothing to offer to help healthcare professionals improve their skills and gain new knowledge. We are tired of this system that values profits more than the people who are actually living with feeding tubes.

As I stood at the microphone and was told, “Well, we don’t know if the problem was caused by the formula,” my mind drifted to the time period in which the tobacco industry continually stated, “Well, we don’t know if cigarettes are causing cancer.” Because those people were speaking for the industry and not for people.

We are sick of it. Our community is growing angry and frustrated. It is building. We are not small. We have influence. And our community that recognizes this is growing rapidly and will continue to do so.

There are those who are coming to understand the importance and necessity of including us. Everyone else will eventually be left behind.

ASPEN, and anyone else in the enteral industry, it’s time to invite us to be a part of what you are doing. If you don’t, we will show up on our own, uninvited. Because the field of enteral nutrition does not exist for the industry. It exists for people living with feeding tubes. This is non-negotiable.

Do you know why I was out there? I was invited by an organization (I will address this in a separate post…but, I am cautiously optimistic about where this will go moving forward). They paid for my flight, my hotel, my food…they offered to pay for Bradley and I to go do something fun as a thanks for coming out there (we were far too busy to take up their offer).

They did not invite me because of my formal education. I don’t think they even know where I went to school or what I studied because it has never come up. It hasn’t been relevant. They did not invite me because of my years of research experience. That had absolutely nothing to do with it.

They invited me because I am a mom. They invited me because they recognized that they can learn from me. I went out there and we talked for a really long time. And we learned from one another so that together, we can make life better for tube-fed people. That is what should be happening all over the field of enteral nutrition.

I hope this organization will continue this and set an example to others. Because if they do, they’re going to see how much improvement comes when those in the enteral industry take the time to listen to and learn from tube-fed people. And others will see it, too.

It’s time for things to change. It’s time for the tube-fed community to start showing up at these presentations and asking the questions that need to be asked and saying the things that need to be said. Throughout history, any time a significant change occurred that was best for the people, that change happened because people stood up and did what was right.

The data is on our side, so if we just keep pushing, we are going to win.